A lesson on the importance of being proactive with my MS care
You'd think I'd adopt the logic I learned in the Army
The first time you try something should not be the moment you absolutely need it.
During my time in the military, I often applied this concept to both performing a critical task with my nondominant hand and using certain medical equipment. In both cases, the logic of “I’m sure I’ll be able to figure it out when the time comes” isn’t very sound, and it eventually became a pet peeve of mine.
The time to unwrap and figure out how to use a lifesaving medical intervention, such as a tourniquet, is not when one’s life needs saving. Likewise, should my dominant hand ever be out of action, the time to figure out if I can use the other one isn’t when I’m completely dependent on it.
I was taught this lesson from the beginning of my time in the Army and became a big proponent of it. You’d think I’d apply the same logic now to the various interventions and helpful devices in my life with multiple sclerosis (MS), but you’d be wrong. As often as this disease has slapped me in the face with my own faulty logic, I still sometimes take the approach of figuring it out when the time comes.
Note to self: Don’t lose valuable time
As a recent example, I had my wheelchair controls switched from the right arm to the left one. MS has made me an unwilling lefty, and I was spending the majority of my time driving by reaching across my body with my left hand. Changing the controls was the practical and safe thing to do, but I didn’t make the switch until nearly a year after I should have.
At the same time, I had an attendant control installed on the back left side of my wheelchair. It allows someone walking beside me to control the chair if I’m too fatigued to do it myself. I don’t need to use it yet, and I’d love to take credit for actually doing something proactive, but the truth is, my wife deserves credit for that one. The only proactive thing I did was to obey, begrudgingly.
Long before I got the wheelchair, I didn’t want to use a cane. By the time I finally gave in, I probably should’ve been using a rollator. I took foolish pride in being good at falling down without injuring myself, and I considered that a good reason to avoid using a mobility aid until it was absolutely necessary. Unfortunately, I lost valuable time by never taking those mobility aids out of the wrapper, so to speak.
This concept also applies to scheduling appointments and discussing MS symptoms and medical interventions with my doctor before something becomes an emergency. If there was ever a time to plan ahead, it’s when it involves taking care of your health. Of course, there’s more to me than just MS, so staying on top of other areas of my health is equally vital.
More important than the professionals I occasionally see are my family members, who are also my caregivers. I see them every day. Honest communication with them about my wants, needs, disabilities, capabilities, and mental health is crucial. More than any doctor, my loved ones need to know how I feel every day. It’d be a disservice to them if I waited until something was an emergency before addressing it.
I know that being proactive by using a new intervention before it’s absolutely necessary can feel like giving up. Right or wrong, that’s how it feels to me most of the time. You’d think I would’ve mastered this pattern by now, but all I can say is that I’m getting better at it.
Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to multiple sclerosis.
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Gillian Ward
Thank you Ben. Your comments resonated with me, such as taking foolish pride in falling down without hurting myself. I got a power wheelchair 9 months ago and I’ve yet to sit in it. I’ll get my head around it hopefully.
Catherine
Thank you for sharing this. I totally understand as I endured a number of falls before using the walking stick I bought several years earlier. Like you, I am getting better - albeit reluctantly. I too see it as giving in. We recently had our bathroom refurbished and there was a tense moment when my husband told the plumber that we wanted grab-rails installed without consulting me. I now have to admit that the rails do make things easier for me in the shower. But please don't tell my husband that!
Libbie
Great article and something we all need to think about. Thank you!
Diana pullos
Me too !!! Only when one of my falls resulted in a broken leg did I finally really accept the fact that I can’t walk like most people. Even now, every day when i have a near miss I berate myself for not being able to be better and stronger and ‘what’s wrong with me??)’ Just stand up straight for God’s sake and concentrate!’ Rather than use the scooter if I’m having trouble walking/standing/bending/ transferring which is ALL THE TIME ! But I refuse to use the scooter full time and exercise when I can. I force myself to walk at very dangerous times! What is wrong with me ???
Rob M.
What underlines my stubbornness in being slow to accept my disability or mobility appliances to help the situation is my steadfast belief in the adage "if you don't use it you lose it". Please everybody, take this saying to heart because it is true. Keep moving, etc., as long as you can (keeping in mind safety and knowing your limits / fatigue signs).
Ellen
I am on the other side of this equation, I am the caregiving spouse. I have spent most of the time trying to convince my husband that the adaptive equipment was made to keep one independent. A year ago we were blessed to be able to afford changing the bathroom in our house to a handicap accessible one and installed a lift. My husband fought me tooth and nail insisting these changes weren’t necessary yet. A year later he is no longer able to walk the steps. The lift allows him the freedom to go to 1st and 2nd floor on his own. The grab rails in the shower allows him to shower on his own. Everything that has been changed in our home is to maintain his independence for as long as that can exist.
I don’t live his life or yours. I only get to watch the man I love so much fight to be his old self. That doesn’t exist anymore even for “healthy” people. Age produces change. Disease produces change. Please, to all of you who are suffering from this horrific disease, LISTEN to those who love you. Take their suggestions of adaptive equipment to heart. It may mean you get to live amongst your family and friends instead of a rehab facility healing from broken bones.
One more point, in one year my husband has changed so much in-terms of his abilities. Today we saw his dr. Her statement to him was safety and reducing fatigue should be top priorities for daily living. She said this because it was apropos him using a wheelchair and a motorized chair.
Just because you’re in a chair for part of the day it doesn’t mean you can’t walk the other part of the day. Preserve strength and be safe. Don’t do stupid! Those people suggesting you change and accept the help from adaptive equipment really love you. They want you independent and enjoying life for as long as you can. If you think in terms of “use it or lose it” than consider this reality. You can expend so much energy getting to activity by walking, resulting in being exhausted by the time you get there and not enjoying that moment. Yes, you used it, your legs. But in this case you LOST the joy of the activity. Figure out what is most important, exercising or enjoying a moment in your life. Don’t miss out on those moments and make your loved ones miss out on them too. They are the ones taking care of you when you are too exhausted to stay at that joyful activity.
Wayne C
Thanks for all of your articles without all the "Rah! Rah! Rah!" that is in most other columns about having MS. And thanks for letting me know that I'm not the only one who was foolishly proud of being able to fall down without injuring myself. I have always been about a year behind on using the mobilty aid I should be using. Now I'm in a power wheelchair so that won't happen anymore.
Benjamin Hofmeister
Be careful Wayne. I leaned too far in my wheelchair while I was out in the backyard and fell not too gracefully over the left arm and into the grass. I'm calling it a fall but really I slid two and a half feet to the ground. I wasn't hurt and for a second thought," I've still got it! ". That feeling quickly went away when I had to call for help and my wife had to bring the lift to set me back in the chair. You're not supposed to fall out of wheelchairs, but I managed to do it anyway.
I'm still good at falling though